Friday, August 10, 2012

Arriving at the End of My Hepatitis C Treatment Journey

As I am publishing this post, I am in the car headed to the lab to get blood drawn for my week 24, end of Hepatitis C treatment, viral load.

Robert will be driving. I will sitting in the back seat of the car. That's because the interferon I have been taking for the last 24 weeks has made me so sensitive to sun I absolutely need the darker tint on the back windows to keep me safe. It will be the hottest day yet this year today here in Los Angeles and the sun and heat are not my friends right now.

Because I am so wiped out from treatment, this trip will be more like an jungle expedition, complete with white knuckle moments when short stops, crazy drivers hurtling towards us and the occasional obscenity uttered by my husband in response to the road conditions will rattle my nerves. I will have to reassure myself over and over again that I can get through this and get back home, safe, sound and in one piece.

My heart will be pounding. I will be dizzy. I'll need to take my time moving from sitting to standing and vice versa. You see, my dysautonomia has been worse from the treatment-related anemia since week 2 and it is probably going to take up to 60 days for the anemia to get better, *fingers-crossed.*

When I get to the UCLA Medical Center, I'll be using my rollator, a.k.a rolling walker, to get the short distance from the car to the lab and back. I need to rely on it because of my fatigue and dizziness. It also doubles as a purse carrier, which is a good thing since my purse feels like it weighs 2 tons right now. My rollator also gives me a place to sit while I wait in line at the lab counter to turn in my lab slip. After the blood draw, it helps keep me on my feet when the post blood-letting wooziness hits as I make my way back to the car.

It's never a dull moment when you live with chronic illness!

Yes I'm battered from this treatment. Some days I am barely functional. But I knew going into this with multiple chronic illnesses in addition to Hepatitis C that treatment could take a huge toll on me and greatly reduce my level of function.

How beat up am I? Let me quantify it using the CFIDS/FM Self Help rating scale. On the scale, one hundred is normal functioning with no symptoms and zero is bedridden and unable to care for myself. I am a solid 10 right now. Before treatment I was a 30 and boy do I miss being there.

So why did I embark on this trek? Because Hepatitis C was the only chronic condition I was living with that could be potentially cured. And since chronic Hepatitis C infection is associated with arthritis, fatigue, fibromyalgia, insulin resistance, type 2 diabetes and peripheral neuropathy, all conditions I have been diagnosed with, it just made sense to try and take it out of the mix as soon as possible.

Now that I have arrived at my destination, the end of my treatment, I just have to wait and see where I have landed. Only time will tell if I have slayed the dragon Hepatitis C and if its absence makes a difference in my health and my quality of life.

That said, I think this 168 day battle was still worth it, even if I don't achieve a SVR (sustained virological response.) That's research talk for the absence of Hepatitis C RNA in my blood 6 months after treatment ends. Even if the virus comes back, at the very least, treatment should reset the clock on my chronic infection, dialing it back down so my inflammation, viral activity and any liver damage gets better in the short run. That's time I'll need if I have to wait for newer antiviral drugs currently in the Hepatitis C research pipeline that are crawling towards FDA approval.

As with every trip you take, there are bound to be some bumps and potholes in the road. As you know, my treatment has run into its fair share of them, from severe anemia by week 4, the discovery at week 20 that my hepatology team failed to get a week 4 viral load needed to determine my treatment length and, of course, lotsand lots of side effects throughout the last 24 weeks.

As I move on and leave these troubles behind me, my greatest disappointment looking back is not getting to do my treatment the right way; that is, per the treatment protocol. When I started treatment, I was physically, mentally and emotionally prepared to give this 100%. And I was as close as humanly possible to perfect as I could! I took my pills on time, up to three times a day, for 168 days. I gave myself 24 weekly injections of interferon. My husband took me to so many lab and clinic appointments in the past 24 weeks that I have simply lost count.

At the start, I didn't think my expectations that my hepatology team would closely follow the treatment protocol were unreasonable. But now that I am at the finish line, arriving labeled as a "difficult patient" by the UCLA Health System, I can clearly see the disparity in the level of commitment between them and myself.

After the discovery of my missing week 4 viral load, my gut wanted to go conservative. So I advocated for extending my treatment from 24 to 48 weeks. But I was quickly and summarily overruled by my doctor. I'm still not happy there is an extra element of risk that has been added to my Hepatitis C treatment, that what I wanted wasn't considered when my doctor made his treatment plan. But it is what it is and now it can't be changed.

Today I know my determination and complete commitment to my Hepatitis C treatment is what got me here to the finish line. It helped me get over the bumps, out of the potholes and through the rough patches.

There were times though when I wasn't always strong enough by myself. In those moments when I was faltering, it was you and your abundant support that lifted me up and carried me forward.

In this age of social media, I invited my family, friends and supporters on Twitter, Facebook and here at my blog to go on this odyssey with me. Your response was simply amazing. All of you, reach out to me through the Internet, brilliantly made up for the lack of support from my hepatology team. I don't know where I would be today without you.

When I am feeling recovered, I plan to pay it forward, to repay you as best I can and be there for you when you need someone the most. I also have an end-of-treatment party to plan and throw for you all, complete with a giveaway raffle! Yes, it's time for a great big celebration of what I was able to accomplish with your help.

So here I am, Day One post-treatment. In the next 24 weeks I will learn where treatment has brought me. In the meantime I continue to be grateful for your company on this last leg of my journey. Let's all think lots of wonderful healing thoughts for each other today and pray my days living with Hepatitis C have come to an end.

I too have just completed treatment for hep C 25 days ago...I was treated for 7 months with Ribavirin, Victrilas, and Peg-intron...I have been very emotional as of late, either very energetic or very irritable...But the biggest issue in post treatment is restless leg syndrome...I an curious if you're still experiencing any issues or if anything else pop up since you posted this? Please help...rehabtommy@yahoo.com

http://silentlyxspoken.blogspot.com/Thank you so so so much for posting this- it gave me hope that someone else out there has battled the same thing and kept their head up during the whole fight... I can only pray I end up having the strength to fight it like you did. You ma'am have just provided me with much needed light, strength, and faith! I hope it all worked well for you, you deserve it!